When Alzheimer's Steals the Mind, How Aggressively to Treat the Body?

Macie Mull was 82 and had suffered from Alzheimer's disease for more than a decade when she developed pneumonia. Her nursing home rushed her to the hospital where she spent the night, receiving intravenous antibiotics. The next day she was back at the nursing home, more confused than ever.

Now she was choking on her puréed food; eating was becoming impossible. And so, one Sunday afternoon, the administrators of her nursing home in Hickory, N.C., asked Mrs. Mull's daughter what to do: Did she want a feeding tube inserted? At that point, Mrs. Mull muttered only a few random words and could no longer recognize her daughter. The feeding tube would almost certainly prolong her life, but was it worth it?

The question of how aggressive to be in treating late-stage Alzheimer's patients is one of the most wrenching and contentious issues in medicine. For every patient who, like Mrs. Mull, reaches the final stage of the disease, there typically are about five or six family members faced with decisions about whether to authorize medical treatments for patients whose bodies live on though their minds are gone.

New research has found that Alzheimer's patients at the end of their lives often receive everything that medicine has to offer.

For example, a recent study of nursing home patients, by Dr. Susan Mitchell of Harvard and the Hebrew Rehabilitation Home for the Aged, found that those with end-stage Alzheimer's received more aggressive medical treatment -- including feeding tubes, intravenous fluids and antibiotics and hospitalizations -- than cancer patients at the end of their lives.

But Alzheimer's patients rarely receive the palliative care intended to relieve suffering but not to prolong life that is normal in cancer cases; they make up only 7 percent of people who receive hospice care.

The comparison with cancer patients is imperfect because cancer patients often die more quickly, and, unlike Alzheimer's patients, they can speak for themselves about their care. But some experts and family members argue that intensive treatment in cases of late-stage Alzheimer's patients is inappropriate, even cruel, and that its costs are excessively high.

For family members, costs of treatment are rarely an issue, because they are mostly borne by taxpayers; most medical and nursing home care is paid for by Medicare and Medicaid. So some end-stage Alzheimer's patients get dialysis when their kidneys fail. Infections are treated with intravenous antibiotics. Patients are rushed to hospitals and intensive care units when they fall ill.

Putting in a feeding tube can cost about $2,000, said Dr. Douglas Nelson, a geriatrician in Hickory, whose practice mostly consists of nursing home patients. Inserting a tube requires a consultation with a speech therapist to verify that food is entering the lungs and an X-ray by a radiologist that requires swallowing barium. The procedure itself is done in a hospital, with an anesthesiologist, and a gastroenterologist or a general surgeon.

A feeding tube can prolong life in a nursing home, which quickly dwarfs the cost of inserting a tube. In North Carolina, Dr. Nelson said, it costs $150 a day on average, not counting medication, to care for a patient in a nursing home.

''The economics are horrific,'' said Dr. Steven DeKosky, director of the Alzheimer's Disease Research Center at the University of Pittsburgh.

Dr. Diane E. Meier, a professor of geriatrics and ethics at Mount Sinai School of Medicine in Manhattan, agreed. ''We are spending a huge amount of money keeping people with irreversible brain failure alive,'' she said. ''If the technology exists, we feel we must use it. Our colleagues in Europe consider what we do bizarre to the point of disbelief.''

But others contend that to withhold treatment is to hasten death, in effect, playing God.

''There are people in my field who have legitimate concerns that we might be too eager to pull the plug,'' said Dr. Christine Cassel, an expert in geriatrics, ethics and end-of-life care, and president and chief executive of the American Board of Internal Medicine. ''Just because someone has Alzheimer's disease doesn't mean their life has no value.''

With tube feeding and medical treatment for each crisis, end-stage Alzheimer's patients can live on, sometimes for years. Many no longer recognize family members, speak only a word or two, cannot walk or eat, and are prone to pneumonia and repeated urinary tract infections.

''We have this sense that you can only be dying for a decent interval, a few months or so,'' said Dr. Joanne Lynn, director of the Washington Home Center for Palliative Care Studies. ''You can't be dying for years.''

But that is what many demented patients do, Dr. Lynn said, adding, ''They just sort of hang on for remarkable lengths of time.''

Family members and doctors must decide what steps to take. But many find themselves at a loss. ''People desperately need some guidance,'' Dr. DeKosky said. ''Everyone, including the docs, is saying: 'Tell us what's O.K. Tell us what's appropriate.' ''

Often, doctors simply treat the medical conditions as they arise, putting off conversations about where, and whether, to draw a line.

''Some physicians and health care providers find it difficult to talk about these things,'' Dr. Mitchell said. ''And it takes a lot of time and effort, which for the most part is not well reimbursed.''

But even when the issue of ending aggressive care arises, family members often disagree about what is going on in the mind of a patient.

''A family member sees what they see as a light of recognition, even if other people standing there can't be sure they saw it,'' Dr. DeKosky said. ''On the other hand, a flicker of recognition isn't the answer. It isn't saying, 'Yes, he's still in there.' ''

In Mrs. Mull's case, her daughter, Patricia Hollar, was torn. ''I walked for a while, and me and the man upstairs did some talking,'' she said.

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Her heart told her that maybe enough was enough, she said. But she feared being too hasty and worried that although she was in charge of deciding her mother's care, her two brothers and sister might think she was condemning their mother to death.

She had the tube inserted. Many others make that choice too.

Randy Bryant of Taylorsville, N.C., chose a feeding tube for his mother, Hattie Kuykendall, 89, who has advanced Alzheimer's disease and lives in a nursing home nearby. He didn't hesitate, he said, when his mother had trouble swallowing, began aspirating food into her lungs and developed pneumonia.

''With a lot of people, it's an easy decision to just let people go ahead and pass away,'' Mr. Bryant said. ''When it's your mother, you can't do that. Would you let your mom die?''

In other families, there is an unspoken concern that if they halt treatment, they will be judged -- by their friends, others in the family or their churches.

''That's a major barrier,'' said Dr. Meier of Mount Sinai. ''Will people accuse me of having killed my mother or not being a caring daughter?''

As a result, each illness is often viewed by family members and doctors as an isolated problem with a potential solution, said Dr. R. Sean Morrison, a professor of palliative care at Mount Sinai.

''We forget the dementia,'' Dr. Morrison said. ''What people see is a potentially curable illness.''

Burton Federman, 79, of Brockton, Mass., allows intravenous antibiotics for the infections of his wife, Diana, 76, but not a feeding tube. Twelve years after she entered a nursing home with Alzheimer's, she is still able to eat if someone spoon-feeds her. He and his two daughters visit her nearly every day.

''She sits in a chair,'' Mr. Federman said. ''She hasn't spoken for several years, and I can't say that when I or any of the family comes that there is any recognition. Occasionally, some sort of guttural sound will come out, but other than that, nothing.''

Reflecting on a common question, he said: ''People ask us: 'Why do you do this? She doesn't know you. She doesn't speak.' But we know ourselves. As long as there's any breath left, we're not writing it off.''

In North Carolina, Dr. Nelson reached a crisis of conscience.

''The more I started looking at these poor people with feeding tubes, the more guilty I started becoming,'' Dr. Nelson said.

''Am I sinning?'' he recalled asking himself, wondering whether it was right to stand by while patients suffered with pain and discomfort from tubes and other treatments.

''I went to medical school to alleviate suffering and I am causing suffering,'' Dr. Nelson said. ''When I die and hopefully go to heaven, God will ask me, 'Did you try everything possible?' I want to say I did.''

Last November, he introduced a position paper to his state medical society, which it passed unanimously, saying that tube feeding was not good medicine for end-stage dementia patients. He also counsels families. When Alzheimer's patients can no longer eat, Dr. Nelson said, ''My advice is to let the patient die peacefully.''

But, he added, few families are receptive, and some become angry. More often than not, the feeding tube goes in.

Dr. Nelson is an exception, Dr. Meier said. More often, she said, doctors tell a family that the patient will starve to death without a feeding tube, and pressure them to have it put in. Her own view, she said, is that ''families should be counseled that loss of an ability to eat and drink is a sign that the patient has entered the terminal phase of the illness'' and the focus should be on palliative care.